Story
Thanks for taking the time to visit my JustGiving page.
I am fundraising to help Maddi who is 17 years old. She was diagnosed over 2 years ago with SPG15 (Hereditary Spastic Paraplegia 15). Its a very rare and life limiting disease and at present Maddi is the only one in the UK with this disease that is known of.
The disease causes paralysis of the limbs as-well as additional neurological symptoms that can affect the eyes, along with Parkinson's and other brain abnormalities. So far Maddi is still trying to keep up her strength with PT but she can only walk a short distance before exhaustion and pain takes over and her balance has become seriously affected which causes her to fall over.
A few months after Maddi’s devastating diagnosis the family continually searched for help within the medical profession for a treatment or a cure, but it does not exist right now!
However, the family were eventually handed a lifeline from a UK Neuroscience group that they could try and create a Gene Therapy for SPG15. Sadly there are no funds available from the NHS to help with this research and basically the clock is ticking with Maddi facing disease degeneration. Money is desperately needed to help cover the remaining costs for this all important research to find a cure, this year alone £40,000 is required to fund the project costs which is ongoing until they find the cure!
Please join me by supporting The Maddi Foundation to help Maddi and other children suffering from SPG15 Disease during this challenging time.
Every Penny raised support towards the battle ahead to find a cure!